I had hoped to post something different. Positive results, progress in pain management, easier access, better home care, more sleep, more time, more done.
That’s not going to happen yet. May began with him still in the hospital with pneumonia. We could tell he was getting better as the level of trained nursing care declined. By the 14th day the nurses barely knew how to administer medications. New RN’s. He was finally off forced oxygen, barely had any going. We waited, asked, waited. When were they going to take him off and watch his O2 saturation levels? They didn’t. We did. I probably should not document this but we just wanted to go home. We removed the O2 just before he was allowed to go outside. The moment we took it off, every nurse, nurse’s aide, Doctor, respiratory therapist or hospital employee just said “Oh!, They took you off your O2!” with great excitement. We said that yes, they did. We went home the next day, May 10th.
The rest of May went rather smoothly, giving me a false sense of optimism. I should know better. His cg A took excellent care of him while he was in the hospital. She was taking him to Dr appointment, doing therapy with him. She was working out so well. In mAy his father came to visit, I actually had 2 evenings free to socialize during May. Colin was sleeping a bit better. He was doing great in therapy and had his pump refilled for the first time.
Then June. She A applied for and took a job at the hospital Colin was in. She kept telling us she would not bail. She did. On the first day of my break. So I had no break. I was able to get someone to cover half a day, then I was back on 24/7. Mr. A went on Vacation, D was still off. Everything I had planned to do was not done. Colin’s second refill date was pushed back, which contained the first dose of the pain medication we have been waiting for. The van went in for general maintenance. Colin and his father argued over the cost and Colin’s contribution. They have not spoken since.
My jury duty request for ineligibility was denied and so I have to report in early July. How do I do that when I can’t guarantee care? We managed to hire a new cg, S, but he won;’t be trained in time to leave him alone with Colin. WTF can I do? I wrote specifically why it would not be a good idea to choose me for a jury. Will they wait for me to arrive at 1 pm with Colin in tow when a cg doesn’t show? Can I stop the proceedings to feed him, give meds, empty catheter adjust him in his chair and make sure he has water? I’d be one pissed off juror and would not give a shit about guilt or innocence. My only goal would be to gtfo asap. Yes, I would send an innocent, most likely minority police harassed person to jail. It would just make my life a bit easier. My bad. I am selfish and cold. I have no fucks to give.
June did bring a visit from my family. It was great to see my sisters and brother in law. We ate too much, drank too much and spent too much money. It was vacation. My older sister and I got remembrance tattoos for our mother. We went through more of her things together and divided them up. It was really good to have them here.
They did get to see first hand what my life is like. Colin is a great deal of work. We have not had good reliable daily care. The job falls on me. I know when people ask why Colin can’t feed himself yet or contribute is some ways to help they are just worried. But there are hurdles for us yet. For him to feed himself we need to get a special table. The UK makes them for about $500 but they cannot be shipped to the US. The one we have found here in the states is about $150 but we need to modify the top to be kidney shaped. Time is not our friend on this one. Environmental controls are very expensive. Just lights/TV will cost about $500 for all the pieces and we’d need a new apple device too. Probably and ipad. More money. More time. We are limited by both.
They also got to see the hardest side of dealing with Colin. When he is in pain, angry and drunk. He blacks out. He doesn’t do it often, but like many (including myself), it happens. It is not easy to be yelled at and profanities hurled when the care is not up to his expectations. It hurts my feelings, makes me resentful. After all, I work my ass off for him. Then I remind myself what has happened, how hard things are and I am the only one he can rely on. I also have to remember that I am not just his mom when I am caring for him. I am his employee, paid by the state. It is my job. I am trying to get others to do it for me. I will continue to do so. I cannot do this forever. But in the meantime, he should not lack for care because I am over worked. It is unfortunate that we do not have a large pool of family and friends who can help. That is one of the drawbacks of being so rural.
Fortunately, it does not happen often. With his pain still unmanaged for another few months, at least, I do not want him slipping into a depression. If he needs to have a few once in awhile, ok by me. I’m not judging. I’m not a quadriplegic.